Here’s a talk I did last year that’s just popped up online. The Cochrane Collaboration is a fabulous organisation, producing gold standard “systematic reviews” summarising all the data that’s ever been collected on important questions in medicine. Cochrane have become great by inviting criticism: for example, they run the Silverman Prize, for the best essay or paper pointing out stuff that they’ve got wrong. At their 21st birthday conference, they asked me to do a talk on what they should do next. I said they should get better at talking to patients; better at talking to policy makers; and better at talking to machines. Here’s the talk:
The last bit on data is particularly important: the “information architecture” of evidence based medicine (if you can tolerate such a phrase) is a chaotic, ad hoc, poorly connected ecosystem of legacy projects. In some respects the whole show is still run on paper, like it’s the 19th century. There’s a lot to be achieved here, and there’s a lot of great stuff being done at Cochrane already, with data.cochrane.org going live a while after this talk was done (but all led by the wonderful Chris Mavergames, who got started long before I started shouting on these issues) and lots of good work elsewhere, that I might write up soon.
Anyway: this is a fun (I hope) non-polished nerdy talk for a nerdy crowd. Enjoy…
Emma Shaw said,
November 5, 2014 at 4:38 pm
Really good talk. Perhaps they could collaborate with NHS Choices who already have summaries for patients, and have really good things like ‘behind the headlines’.
jae rae said,
November 7, 2014 at 1:38 pm
I’d love to know if you see a spike in book purchases whenever you post. I just bought your new book so one of them would be me).
Mary Saunders said,
November 10, 2014 at 5:46 pm
Thank you so much.
I am participating with a group of patient-advocates at Oregon Health Sciences University, Knight Cancer Institute.
OHSU has been newly designated as a Cochrane participant.
The group I participate with is known as Scientific Research Advocates (SRA).
A way our group has been used at OHSU-KCI is to write rules for lay summaries for research proposals. I am hearing user-friendly language described as “plain-language” in this video I am watching today.
I interpret my role in SRA as patient-advocate as well as research advocate. I am interested in getting accessible research into use, including how to use immune- and other body-system supports accessible to patients.
The example I usually put up is the work and products of Paul Stamets, who has video widely distributed on how he resigned as an investigator so he could provide a mushroom product that was being used in trials. His own mother ended up being treated in the trial, and she had a remission from Stage IV breast cancer. The trials took place at Swedish and University-Hospitals in the Seattle area.
Paul Stamets has been a speaker at the National College of Natural Medicine, where I have been working as a medical model. I would love to see more collaboration in Portland, the way there has already been collaboration with Bastyr (another natural-medicine center) in Seattle (with the trials using trametes (Coriolus in China and Japan) versicolor, also known commonly as turkey-tail mushroom).
I noted well that your first question was from a person with lived experience of breast cancer. I can’t say I am surprised that was your first question.
I do not know if it is more likely you will get an invitation to speak from the Seattle area, from the Portland area, or from the San Francisco Bay area, but I do hope you will get to the west coast of the U.S. soon.
There are a lot of rather feisty people on the West Coast. I would say we might be a source of folks who are not afraid to ask uncomfortable questions, in the manner of Peter Gotzsche.
Thanks again.
Ed said,
November 14, 2014 at 11:19 pm
There is nothing I like more than an enthuasiastic professional explaining their work in an engaging way. Ben Goldacre is one of my favourites, so is Steve Krug (the website usuability guy).
So naturally I was ecstatic to see Ben channel Steve Krug in his gentle criticism of the Cochrane website at the start of this talk.
Magic.
Lee Rudolph said,
November 15, 2014 at 10:33 pm
My blurry eyes read “poorly connected ecosystem” as “poorly connected ectoplasm”. Made perfect sense, too.
John Stout said,
November 16, 2014 at 11:51 am
I don’t know if you’ve seen the latest XKCD webcomic episode (xkcd.com/1447/) entitled Meta-Analysis, but since it mentions Cochrane it’s worth a look.
Antony Slegg said,
December 31, 2014 at 1:18 pm
Probably posted in the wrong place.
Rereading Bad Pharma – definitely more annoying the second time around!
I am a practicing engineer with a physical sciences background so have some background in statistics etc. but my understanding of tbe medicine is poor.
I do see however that the raw data is complex and lengthy and not something the uninitiated can easily grasp.
As the biggest issue seems to be the public availability of this data why not create some sort of Wiki that assigns various drugs a rating based on how many of the trials have tbeir raw data published. A simple A to F rating along the lines of home electrical appliance efficiency ratings along with + for a meta-analysis having been done.
A drug with an F would warn the medical community (and their Customers) to be wary whereas an A+ would be the gold standard. Simplification carries risks but such a basic system would maybe encourage busy people to at least glance at the data and possibly encourage deeper investigation.
Engineer stands ready to be blasted to pieces as to wby this could NEVER work. Maybe someone has a better alternative.